Ten

Ten

Ten (number)
equivalent to the product of five and two; one more than nine; 10

Ten – number of years, to the date, of being diagnosed with MS

April 15, 2009 – ten years of living with multiple sclerosis

Ten years ago I couldn’t see what or where I would be now.

Ten years ago I walked into a hospital in a small European city to get the results of a lumbar puncture from two weeks prior. Like a movie, I stood outside of the hospital for 15 minutes, knowing that might life would never be the same coming out on the other side. I took a deep breath and in I went. I met with the resident on duty, a name I’m not sure I ever knew, where I was told in a hallway, that the CSF results were 99% conclusive for multiple sclerosis. What’s next? Call the clinic after the holiday. Two weeks later I came home to New York and collapsed on my family and a neurologist I met, once prior, a few months earlier.

Ten years ago, I got MS for my 40th bday, but on the verge of turning 50 (geez!) in a few weeks, I look back and recall my neurologist told me that I would be ok. And that I would likely continue to live my life with mild disease burden. 

Ten years ago, I could never have seen what he told me. Ten years ago my insides were sicker then they had ever been, and yet looking at me, I “looked so well.” I couldn’t hear people, over the buzzing, literally, that I would be ok. That I would be more than ok. 

Some nights I laid awake 3,000 miles away from home, in a foreign country, wishing that I had a terminal illness so that I didn’t have to live the rest of my life in turmoil. It wasn’t that I wanted to die, I just couldn’t envision living the way I was at that time. 

While I am fundamentally the same slightly cracked, mildly scrambled, person I was prior to the MS, what I learned is that life probably wouldn’t have been too different had I not been diagnosed with MS. Meaning, I’ve heard people say that being diagnosed was life altering for them. That they found more meaning then if they hadn’t been diagnosed. 

While I have made friends along the way as a result, and hopefully helped a few as well, I would tie this convoluted “gift” up in a bow, and give it right back to where it came from without thinking twice.

Multiple Sclerosis doesn’t just impact the people who have it. It touches everyone around it. It’s like a super old ivy growing around a building. It can look beautiful, but yet wreak hell on anything it comes in contact with, strangling everything in its path.  

People like to use war analogies for diseases (warrior, battle, fight, etc.). Or I’ve heard so many times over the years, “I could never do what you do.” Or the phrase, “you don’t know how strong you are until you have no choice.” I cry bullshit to all of it. If people get sicker, does that mean they have fought hard enough and it’s their fault? I am not a warrior, I am not special. We all have our “things” to deal with and we do in our own way. 

Ten years later I am still a grand daughter, daughter, sister, cousin, friend, business owner, music lover, foodie, traveller, part-time contrarian, ever reforming type A control-freak workaholic, and questioner of science & medicine. 

Two years ago to the day, I started this blog & social media (Facebook & Twitter). Thanks to everyone who sticks with me and it. 

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Year

Year

Year (noun)
the period of about 3651/4 solar days required for one revolution of the earth around the sun

The greatest teacher failure is – Yoda

365 messy opportunities
365 days of uncertainty
365 days of wonder

What will you do with your next 365 days? When people ask me what it’s like to live with multiple sclerosis the first thing that comes to mind is add more uncertainty into a life that is already uncertain. Sometimes it’s mundane, sometimes it fucking sucks, and sometimes opportunities arise that wouldn’t otherwise.

At the beginning of this year it definitely fucking sucked, but 364 uncertain days later, well, it’s not just ok, but it’s pretty amazing. It’s easy to focus on the diddints, as in I didn’t win the lottery, I didn’t lose those 10 or 50lbs, or I didn’t master the art of baking, BUT…

I DID start my own business, I DID travel overseas to see good friends and to new places, I DID spend time with people I love, I DID start this blog and accompanying social media, I DID start a great fitness routine (more after the New Year!), I DID create new memories, and I DO look forward to the next 365 adventurous days to come.

I wish you good health, happiness, prosperity, and loads of DIDs for the New Year.

PS – And I DIDN’T have a flare-up this year. I was just too busy DOING the above DIDs. And that’s a good DIDN’T.

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Sick

Sick

Sick (adjective)
affected by physical or mental illness

Tis the season. In the beginning, back in 2009, after my diagnosis and starting treatment, I got sick. Like normal, regular, sick. It caught me off guard because, well duh, now that I had multiple sclerosis, clearly I was immune to the likes of viruses?! Yeah, no.

Each sniffle, cough, headache, turned into a phone call to my neurologist. He assured me that yes, I can still get run of the mill sick and that it was really just a matter of re-learning my body, and that no I definitely was not going to die from having a cold.

What it did do was make me more in tune with the rhythm of my body as I hadn’t been prior. I paid more attention to the sniffles, headaches, and coughs, whereas in the past I would have just moved on or not even notice. Now I had two autoimmune diseases to manage, while being completely insulted that I could still get run-of-the-mill ill.

Fast-forward eight plus years since my diagnosis, I’ve noticed that I actually get “normal sick” less than before. Said neurologist told me that “they” think there is some protective factor from the medicine I take for the multiple sclerosis, though it’s anecdotal.

Lately I’ve been traveling like a road warrior, which I didn’t think would ever happen again. I didn’t think my body could hold up to this type of work, travel, intensity. And while it’s not perfect, and I’m definitely older than I was when I used to do it, I’m more than holding my own with my business and travel. Sure I have gastroenteritis with a cold as a cherry on top, and I have to watch that the asthma is managed, and desperately hope my currently overactive, fighting these bugs, immune system doesn’t cause an MS flare-up, I can still trust in myself and my body.

Lest you think otherwise, I am so proper sick. From my head to my toes, body ache, tissue mounds on the floor, ordering extra Scott from Amazon…sick. Now excuse me while I go back to the “library” to answer the song of the gastroenteritis minstrels.

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Travel

Travel

Travel (verb)
make a journey, typically of some length or abroad

Lately I’ve been traveling (by air) extensively again, both in the U.S. and abroad, for fun and business. I thought these days were behind me. Being diagnosed with multiple sclerosis I didn’t think I could handle the hours needed to do it. Not only do I do it, but I excel at it once again. I think the exhaustion is more about being older, than having MS.

That said, some tips and tricks how I make air travel easier for me.
1) I slowly pack the day before. This has been true since well before the MS. If I pack too far out, I take too much.
2) I take a car service instead of public transportation. This helps to preserve my energy to deal with the airports and flying, which are both exhausting.
3) I arrive early for domestic & international flights to allow for loads of time to get through security. I have both TSA pre-check & global entry. If you need help, ask for it. If you need a wheelchair, ask for it. There is no shame in preserving your energy.
4) If the lines are long I ask to go to the front for medical reasons. Each airport and security line has their own ideas of what sympathy looks like. I find TSA to be short on it for sure.
5) I ask to pre-board due to medical reasons. While I don’t need help walking, not having to board in a crowd cuts down on anxiety, which also reduces stress levels. Anything I can do to tell keep calm, makes a huge difference to getting to where I need to go and being able to function at 100% when I do.
6) If I’m going to be away for more than a night or two, I take one of my own pillows. Sleeping in a hotel, however nice, is precarious as best. Weird noises, varying mattresses, errant digital lights. Anything I do to help sleep better, keeps the MS symptoms at bay. Plus as a Taurus, I much prefer creature comforts. And if it doesn’t impact anyone else, why not!

It took me a long time to be able to ask for concessions, because karma is the great equalizer. I know many people living with this disease who are much worse off, and I thought that I needed to “do it like everyone else,” but then I realized, it’s just like using air conditioning in December if I need it. The more I stand in long lines, the more tired my legs become, which impacts the rest of my trip.

So in the end, I did what I tell others to do. Be kind to yourself and ask for help. It doesn’t make you weak, it makes you strong.

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